Dying comfortably in very old age with or without dementia in different care settings – a representative "older old" population study

Abstract

Background Comfort is frequently ranked important for a good death. Although rising numbers of people are dying in very old age, many with dementia, little is known about symptom control for “older old” people or whether care in different settings enables them to die comfortably. This study aims to examine, in a population-representative sample, associations between factors potentially related to reported comfort during very old people’s final illness: physical and cognitive disability, place of care and transitions in their final illness, and place of death. Methods Retrospective analyses linked three data sources for n=180 deceased study participants (68% women) aged 79-107 in a representative population-based UK study, the Cambridge City over-75s Cohort (CC75C): i) prospective in-vivo dementia diagnoses and cognitive assessments, ii) certified place of death records, iii) data from interviews with relatives/close carers including symptoms and “How comfortable was he/she in his/her final illness?” Results In the last year of life 83% were disabled in basic activities, 37% had moderate/severe dementia and 45% minimal/mild dementia or cognitive impairment. Regardless of dementia/cognitive status, three-quarters died following a final illness lasting a week or longer. 37%, 44%, 13% and 7% of the deceased were described as having been “very comfortable”, “comfortable”, “fairly comfortable” or “uncomfortable” respectively during their final illness, but reported symptoms were common: distress, pain, depression and delirium or confusion each affected 40-50%. For only 10% were no symptoms reported. There were ≥4-fold increased odds of dying comfortably associated with being in a care home during the final illness, dying in a care home, and with staying in place (dying at what death certificates record as “usual address”), whether at home or care home, compared with hospital, but no significant association with disability or dementia/cognitive status, regardless of adjustment. Conclusions These findings are consistent with reports that care homes can provide care akin to hospice for the very old and support an approach of supporting residents to stay in their care home or own home if possible. Findings on reported high prevalence of multiple symptoms can inform policy and training to improve older old people’s end-of-life care in all settings.Funders We thank all the past CC75C sponsors for financial support spanning the decades since the Medical Research Council enabled the first follow-up survey (see study website for full list of project grants: http://www.cc75c.group.cam.ac.uk/pages/grant/default.htm). A BUPA Foundation Health and Care of Older People grant supported data collection for these analyses and we particularly thank our current funder Abbeyfield Research Foundation. CC75C was a member study of the National Institute for Health Research funded Collaboration for Leadership in Applied Health Research & Care (CLAHRC) for Cambridgeshire and Peterborough. No funder sponsor played any role in the study design; in the collection, analysis, and interpretation of data; or in the writing of the report and the decision to submit the article for publication. All researchers were independent from funders